This Positive Life: Tonya on Motherhood, Love, Loss and Laughter as Medicine

Oh, well, I think it is good. When I first started dating my partner -- well, before we started dating, I told her that I was positive. She thought that I was lying to get out of going out with her. But then she realized, well, who would lie about that? And so, she was like, "Oh, OK."

I was nervous. Because I was in a relationship prior to that, and I didn't tell the person; for too long, I didn't tell that person.

Just so we're clear, you had a relationship with a man, Eric, who was HIV positive, and from whom you contracted your HIV.

Right. My children's father.

Who later died.

Yes, he passed away. And, we'd separated.

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Oh, you did separate?

We did separate, because his family felt like they could take better care of him where he was from. He was from San Francisco.

But it wasn't a separation of the marriage, then?

It was.

So the marriage was having a separation?

Right. Prior to the diagnosis, it was already heading down that direction.

All right. So then, at some point, you began a relationship with a woman.

Yes.

So I heard the pronoun change and I just wanted to clarify and make sure we're on the same page now.

Right. Right.

OK. When did you tell your parents and family? You actually described telling your daughter. Do you remember telling your parents?

My father's no longer here. He passed away right before my kids' father. And my mother: when I finally told her, it was a rushed kind of deal. Because I was doing an article for the Seattle Times, and I didn't want her to read it in the Seattle Times first. It was on the cover, so it really would have been something that was out there -- with a picture -- so I wouldn't have gotten out of that.

So I just told her, because I felt like, you know what? It's time. And it's OK. Because it's my thing. And she was like, "I don't know why. You could have come to me. I'm your mother." Not what I expected, but it worked out.

Tell me some about your background, and your family. What kind of neighborhood did you grow up in?

I grew up with my mother. She was a single parent for most of my life with my younger sister. We're eight years apart. She was a cosmetologist for the majority of my life. She's a longshoreman now. She was good. You know, working hard. Taking care of her daughters. She tried to put us in areas that were not really urban, more ... I don't know how you'd ... what's not urban?

Suburban?

Suburban, yes. And I grew up around a lot of different people -- Asians, Hispanics. It was great. I felt my mom really tried to keep me away from the urban areas. She really tried to give me a sense of direction the other way. Because she wanted me to go to school. She wanted me to be successful.

Were you growing up modestly, and her concern was about keeping you away from, what, drugs and crime?

Right. She felt like it was better. I don't really want to say better, because it's not really better. But I just think she was trying to give us a fair chance.

The best jobs.

Right. And she kept saying that the schools were better. And that was proven to be true. It's different. And so it worked out. And I had a rainbow of friends. So it worked for me.

Do you believe that it's easier or harder for someone to be HIV positive in the community you come from, versus all the other communities in which they may have been?

I think it's easier; where I grew up, it would be easier. Because it's talked about in the schools. It's promoted: safe sex; healthy living; having a good, healthy lifestyle. They try to demonstrate that.

You know, I do a lot of speaking engagements at a lot of different schools. And I think it just depends on the home training, really, versus the community. Because it comes from the home and then people bring it out to the community. So, it varies.

I was really lucky growing up. We weren't rich. We weren't poor. But we just ... we made it.

Let's talk about your HIV treatment and care -- and your health care. What has your health been like since your diagnosis?

Great. I've been pretty healthy. My first regimen of medication: I'm on the same regimen. I've been on the same regimen now that I've been positive for almost 10 years. I've only changed one medication.

How did you find your HIV specialist?

My primary care physician didn't really know anything about HIV. She was a registered nurse-practitioner. She was somebody that saw my children, and myself, for years. So this was like a blow to her, as well, when the test came back.

She had heard about an infectious disease doctor and gave me a referral. That's how it worked out. And it turns out that I had a great infectious disease doctor who had been in the field since the '80s. I just loved her passion. To be in 2002, and to still have that passion; you know, it's rare. She was really great. So it was through my primary care physician that I found her.

So you started HIV medications rather early?

Yes, I did.

And what is your regimen?

I take Sustiva [efavirenz, Stocrin], and I take Epivir [lamivudine, 3TC] and Ziagen [abacavir].

How do you access your HIV medications? Do you have private insurance, or Medicaid, or ADAP, or what?

I have Medicaid. And I go to Madison Clinic, which is located at Harborview. That's generally where a lot of the clients go around here in King County if they're local -- Seattle, Renton, Kent -- they usually come downtown here to Madison Clinic, because that's what they focus on, is HIV and AIDS care. So you can get your medications there, as well.

So, it's Medicare, but you do have copays that you will probably pay? Some sort of cost associated with that?

Not right now.

When you pick up your medications, you don't have even a $5 copay?

No.

Do you know your CD4 count and your viral load?

My viral load is undetectable; and my CD4 count is a little over 1,200.

That's really high.

Yes.

That's almost showing off.

Yeah. I'm actually really happy about it. I was surprised. Because I haven't always been dedicated. Because I've been pill fatigued. You know? And sometimes I just ... I'm done with it. I'm just over it. But I have things that motivate me. So I just keep going.

What are those?

My children. They're awesome: 16, 14 and 12. They're like little adults, and comedians. They inspire me to do well. And a good, healthy relationship. I'm constantly laughing. I have good friends. I have a good job. I love what I do.

What else do you do to keep healthy? And you're touching upon it, I believe, in terms of social support, and laughter, and having a good state of mind. But what else? Do you try to do exercise, or stick to any sort of special diet?

Well, I do work in downtown Seattle. I take the bus, so it takes like 45 minutes to get here. And I make sure I get a good brisk walk to my office every day. I just stay busy. I go out dancing. I don't really say I exercise, per se. I'm not really a big exercise person. I've signed up for many gym memberships, and never have any follow-through.

But I really believe in healthy relationships. And do I eat healthy? Sometimes. Sometimes not. You know, it depends. I just stay busy.

What kind of work do you do?

I'm a peer advocate for BABES Network-YWCA. I help women get into housing, or give them referrals to get into housing, or medical care; case management.

And what is the mission of the BABES organization?

Well, I really can't spit out the mission. We have our goals. We just try to help women. We want to meet women where they're at. We want them to be able to advocate for themselves. We want to have them be able to navigate their way through the system and not feel so frustrated.

Because there used to be a time when the person would come in and then the case worker would fill out the paperwork for them. Those times ... you know, the funding is slim to none now. So we try to get them motivated. We try to promote a healthier lifestyle for them. We try to let them know that they have this disease, but that it's not the end of the world for them. We try to help them find their inner voice, to be more powerful.

What were you doing before you were diagnosed with HIV? Was it similar to the work you're doing now?

Oh, I was a mother. And that is all kinds of jobs. But I was a student. I did go to Renton Technical College and took the emergency dispatching class. I thought that's what I wanted to do. In fact, I came into BABES to talk about my interview process with one of the peer counselors at the time. And so that's how I gleaned into BABES. Because I was just here one day.

How did you become involved in HIV activism?

Working, starting with BABES, just being part of the staff and learning about policy, going up to Olympia and talking to my representatives. I've been to Washington, D.C., and I've met with representatives there. I have met with a lot of people from all over the United States.

So, when people get together and we're on the same common page, or path, oh, it's some powerful stuff. I love it. I think that's the best part of my job: doing outreach, and speaking, and advocating, and fighting the good fight. I don't know if I would, like, sleep on a street corner for a billion days, or something, but I definitely feel like I'm a good fighter for the cause.

Don't you ever get sick of talking and thinking about HIV?

Sometimes. I wouldn't be human if I didn't. Sometimes I get tired of it. Sometimes. But then, it's a part of me. It's not who I am, but it's a part of who I am.

And it's definitely not over. Women are always getting stuck on the back burner. And I'm frustrated with that. That can be frustrating. And politics, in general, is frustrating. But if we don't do it, who's going to do it? So I feel like I'm just going to keep doing it. When I can't do it, I hope that something that I say will inspire somebody else to do it.

Comment by: natalia
(jamaica)
Thu., Nov. 7, 2013 at 5:28 pm UTC
it can be so drastic and hurtfull for persons who are living with hiv.its even sad when most of them can't even share it with their families for their afraid of what will be said.my advice is continue be positve and strong .

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